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9.22.2010

I need help

Some of you are aware of this, while [I assume] some of you don't know and may not even know me. This might be your first time visiting my blog. If so, "Hi! I usually talk about cakes, my house or whine about stupid stuff." I promise I'll get back to that tomorrow. Until then, I need some help.

I have a younger sister. She's 25 years old and has Turner's Syndrome. It's a genetic disorder where the symptoms can range anywhere from mild systemic cosmetic issues (looking at her face you can see she has a genetic disorder. She doesn't look like someone with Downs Syndrome, but similar.) to more severe heart issues (she has that too. Pacemaker at 18). In most cases, these women (it only affects females) live normal lives, but in Kacie's case, she also has issues with her mental capacity. She has a low IQ. Not so low that she can't function, but low enough that she has trouble grasping 'big picture' issues. She can cook, knows how to measure out ingredients, but wouldn't know how to convert from teaspoons and tablespoons to cups. (OK, I don't know how to do that. Bad example) She knows how to use money but doesn't understand that when the money is gone, she can't keep writing checks. (Fine, there are plenty of 'normal' people who don't get that either.)

Kacie lived with her mother for most of her life. Six years ago she went to stay with her father in Georgia. The idea was that she would have more opportunities in Atlanta for programs that could help her. Well, her dad moved to Statesboro (out in the sticks) and there's nothing close by anymore. So, it was decided that she would come back to Arkansas and I would find an apartment here for her, as well as some kind of program that would help her – some kind of continued adult education. Kacie planned to come back here for a visit. Two days before she left, she told me that it wouldn't be a visit. She was moving for good. I told her that really didn't work, these things take time. She had plans to stay with one of her fathers friends and help him at the apartments he worked at. And while I didn't really like this as a temporary plan, I liked it even less as a permanent plan. That was in March, I believe.

Since then I have managed to get Kacie's SSI moved from her father to me, opened her both checking and savings accounts, gotten her an Arkansas ID, and Medicaid. She is now enrolled in the Easter Seals Adult Day program but hasn't started because she doesn't have a permanent place to live. I won't go into why things didn't work out with her father's friend. But at the moment she is staying with my mother-in-law. The plan was that they could help each other out. It would push my MIL to become more independent and Kacie would be in a place that I deemed safe. Regardless, they aren't exactly getting along. Strong personalities and such.

I have tried every single disabled apartment complex that I know of.
She is on the waiting list for all three of the Easter Seals apartment complexes.
She should now be on the waiting list for the Cerebral Palsy apartments as well. (There are 5 people ahead of her on this list)
I'm in the process of filling out an application for PathFinders. They claim an apartment will open soon, but I'm not sure where it will be. And I don't know if anyone is on the list before her.

If I go through a disabled complex, the rent is subsidized. This way, they will only charge Kacie 30% of whatever she brings in. And right now, with her SSI, that's only $671/month.

I tried going the route of Section 8 housing. Little Rock doesn't have an open list right now, I was told to call North Little Rock and that I could use that anywhere. I called and put her on that list. It took 3 weeks to get a call back. They said I would get a letter in a couple of months and that it could take a COUPLE OF YEARS to get to her name on the list. So I can't use any HUD/Section 8 housing until she has a voucher.
I've called Arkansas Enterprises for the Developmentally Disabled.
Little Rock Community Mental Health Center.
Our Way Apartments
The ARC of Arkansas
None of these places have vacancies or, they take Section 8.

I've tried calling Medicaid, but since she's on SSI, they won't assign her a case worker. They told me there's someone in charge of SSI cases. I've called her several times and left messages. She hasn't called me back. I don't know what to do. Because of Kacie's mental problems I don't feel safe with her in a regular apartment complex (nor can she afford it) and I would prefer her to be in a place where the people around her are 'like' her. People who can relate to her issues. A place where there is someone watching over her–even if just from a distance. Someone who can say, 'Whoa. That's a stranger and I don't trust them.' She doesn't need day to day care. She lived alone for stretches of time while her dad was on business and her stepmother was visiting family. She can take care of herself on a micro level - cooking, cleaning (both the house and herself), she doesn't have issues with this. She can not drive. But there are transportation options. Kacie want's desperately to live on her own. She want's her independence. And I want to help her have it. But I'm running out of options.

Do you know someone who can help us? Can you help us? Do you know a place where she can stay? Is there something I'm missing? My husband mentioned food stamps, I hadn't thought of that. It will definitely help her to free up her money for other things.

I apologize that this was so long. If you have any questions that I haven't answered, ask in the comments, I'll answer. Thank you in advance. If you could forward this post to other people that might know something or someone, please do!

Thank you for reading this, I'm not usually this long winded. (OK, fine, I am)

16 comments:

Oh Kelli, you certainly do need help. And it seems to me you've really been exhaustive in your efforts. I have one person I could ask...different situation and I don't know the details of how they make it work so it might not even be relevant (they live in a different state too) but you never know. I'll let you know. Best of luck...hopefully someone else can give you something more concrete.

I'm friends with Kerri Case and saw your plea for help. Call me this evening. I just got my brother settled somewhere and would like to talk with you about it.I live in LR.~Courtney Frizzell501.416.3085

Kelli,I'm the editor of Little Rock Family and Little Rock Special Family - a supplement for parents with special needs children (and adults). Here are two suggestions. They may not have facilities in Little Rock, but they do have them in central Arkansas.

http://www.friendshipcommunitycare.com/

http://www.firststep.youradteam.com/?page_id=55

I am checking with a few other resources. Will let you know if I find out anything. Best of luck!

I agree with Jennifer, Friendship Community Care or First Step may be able to help. I will check with others here at ACCESS, but I think aside from Easter Seals, Pathfinders and the Arc, you have maxxed out other local adult residential service resources. Also, Courtney is my neighbor and is friends with Eleanor. Definitely give her a call to hear what she has to say!

wow I am sooooo amazed at your resourcefulness!!! It seems like you feel out of resources but I'm telling ya, you have gone a lot further than the "average" caretaker!Did your sister have Georgia Medicaid for her medical insurance when she lived there? Now that she is in AK, you will need to apply for AK Medicaid- which she should qualify since she has SSI.I did some searching & found this site: https://access.arkansas.gov/Welcome.aspx

You can get Medicaid with losing SSI. I have a coworker who advises families on funding who has offered to either e-mail some key information or sit down with you. I'll send you her information. Also, try checking with Integity: http://www.integrityinc.org/ourservices.html